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Patient Advocacy


Patient Evidence Submissions - Why your input is necessary

One of the mandates of the Transparent Drug System for Patients Act is to put in place a public drug system that is more responsive to patients. However, patients’ perspectives on diseases and treatment options are not readily available.

Since it is not realistic for the Ministry of Health and Long-Term Care to look at individual testimonials, a collective approach, known as patient advocacy groups, was developed. This system allows input from a group of patients and caregivers to be brought forward by organizations such as the Ontario Lung Association. This allows the Ministry to access information regarding the experiences of patients and their caregivers.

The Ontario Lung Association has developed confidential surveys for two drugs currently under review. These surveys will allow individuals to provide their feedback to the Ministry's drug review process.

Types of questions asked

You may be curious about the types of questions you will be asked in the Patient Evidence Submission survey. Here are some examples:

  • What are the most important aspects of the condition you would like to see addressed by treatments?
  • What positive and negative impacts does the drug have on the condition?
  • Which symptoms is the drug best or worst at treating?
  • What are the side effects of the drug?

Treatments CURENTLY under review

We are now collecting feedback from patients and their caregivers on the following drugs. We would value any input you may have to offer:

  1. Breo Ellipta - for asthma
The Ontario government is currently reviewing input related to the drug, Esbriet (pirfenidone).  If you or someone you know is affected by Idiopathic Pulmonary Fibrosis (IPF),  you may wish to take further action by contacting or booking a meeting with your own MPP, and/or writing to the Minister of Health and Long-term Care

 

 

 

The Government of Ontario now has a process to allow patients and their caregivers to contribute to the province’s drug review process. Ontario’s Committee to Evaluate Drugs, in their consideration of drug approvals and funding, is interested to understand the real impact that diseases and treatments have on the daily lives of patients and caregivers. The way patients and caregivers contribute to the process is by providing their personal experiences to registered patient advocacy groups. When a drug is up for review in Ontario, registered Patient Advocacy Groups can make a submission on behalf of a group of patients. The goal of such submissions is to help the Committee to Evaluate Drugs to understand the personal implications of the illness and its treatments. The Ontario Lung Association is pleased to be registered as a Patient Advocacy Group to help provide patients and their caregivers a voice in the consideration of medications related to lung disease.